Saying Goodbye To Bean

Diagnosis: HLHS

By Bean's Mother

This article was originally read on CBC radio by the mother who faced this tragic loss. We are grateful for their permission to reprint it here.

Wobbly kneed and feeling faint, I let my husband help me down the hospital corridor. The midwife takes my other arm. "Is she alright?" a concerned nurse asks, and I smile. I know I am pale, but I want to walk. I want to walk to the room to deliver my baby: my dead baby, the baby we chose to terminate 3 days earlier.

"Interrupt the pregnancy." As if I could restart it later.

"Interrupt the pregnancy." When I first heard that term, I never thought I would do it. I knew I never could and yet here I was, shuffling to the ante natal ward at Vic General, the pregnancy already interrupted. My baby already dead.

Three weeks earlier, after our second routine ultrasound, our lives changed. The pictures were supposed to be pretty, I emailed the first to friends and family. Our little Bean.

They hadn't gotten the heart measurement but that was nothing to worry about. And we only worried a bit, not enough to have my husband at the second ultrasound, the one when they did get the heart measurement. But he was there two days later, at the perinatalogist's in Vancouver, for the more detailed level II ultrasound when they told us exactly what the term "abnormal heart" would mean.

For those few days in between the first uttering of the phrase "abnormal heart" and the final explanation, we filled our minds with holes. Babies with holes in their hearts. Self healing holes, it happens all the time. These holes heal. It's scary but not unusual.

So even though we had gone to Vancouver to find out about "abnormal heart" we were completely unprepared to hear "Hypoplastic left heart syndrome," "3 chambered heart," "four options: three open heart surgeries, heart transplant, palliative care, or termination." I fainted.

We had thought we would get Chinese food between morning and afternoon appointments, so naive were we. We never left the hospital grounds. We came home stunned, shattered, different people, no longer the parents of a healthy baby.

The next weeks were spent on the phone talking to doctors and midwifes, friends, family. We decided we would have the heart transplant. We decided we would have the three part surgery. We barely talked about termination. We would never "interrupt the pregnancy."

I spoke to more doctors, I researched online and I began to understand the life our baby would have. If Bean was a candidate for the surgeries, our baby would spend the first months in NICU and have three open heart surgeries before age two. Only to face a heart transplant later on.

If we chose the transplant, Bean would spend the first unknown number of months in Toronto or California awaiting a heart. Bean would never have a normal life. And we started to understand that Bean may not be a candidate for either surgery. But still the percentages were 50/50. We had to try. We had to fight for our child.

But the 50/50 didn't refer to quality of life. The 50/50 referred to survival of surgery, not beyond, not infection or pneumonia or other complications or a life in hospital. We began to think it was cruel to insist upon this baby's birth. But still, how do you kill your own child?

I wished I could "pull the plug" from her life support system, me. We decided to go to Port Renfrew, to walk around and talk and be alone and see if we could figure out what to do. We had too much information, too many choices, no solutions and time was running out.

The legal end to "late term abortions" is 24 weeks. I was beginning my twenty-second. We decided we would each write a letter, anything -- just write down what we were feeling, what we were thinking. Everyday we had changed our minds, everyday we couldn't decide. How does one decide?

All we wanted, like every pregnant couple, was a healthy child. We didn't have that. Bean would never be healthy, what were we supposed to do?

I thought I would write a comparative list: a heart transplant is good because ... instead, I wrote a goodbye letter to Bean. And so did my husband. We cried and cried, realizing the most humane thing we could do was release Bean from an unworkable body. Save our baby from pain.

When we returned to Victoria we talked to our midwives, met with the perinatalogist, who assured us the death would be painless, much like falling asleep. I could deliver the baby, enabling me to hold Bean afterward. The next week was spent saying goodbye, crying, talking and singing to Bean, reading poetry and making peace with our decision and our God.

Still, when we went in for the injection to stop her little flawed heart from beating, I didn't know how I would survive. My husband broke down and cried. I focussed on him. And three days later, there I was hobbling to the private room set aside for women like me. Women who have chosen to "interrupt the pregnancy."

I gave birth to Bean, a girl, 21 hours later. Born still. We held her, a chaplain blessed her, we sang to her, dressed her in a little outfit, wrapped her in blankets and did everything we could to commemorate her existence. We took pictures.

I keep one picture in a heart-shaped locket around my neck. Another sits framed on my bedside table, next to the doll I made for her. Her ashes will be buried under her tree one day, when we own a house.

Nine months ago Bean was born. Nine long, painful, teary, lonely months ago. Our lives have changed immeasurably since the birth of our baby. We do not regret our decision, only that we had to make it. It was the best we could do for our first-born child.


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